Lay summary
Motor neurone disease affects one in 350 people in their lifetime. MND is terminal, with increasing paralysis and continually changing needs including mobility, breathing, voice and feeding assistance. The multi-disciplinary team includes medical and allied health, hospice and MND NZ support advisors.
MNDNZ developed best practice recommendations with a working group in 2022, but it is unknown how practice fits against these recommendations, overall and for Māori with MND, and unmet needs.
This proposal aims to understand key unmet needs for Māori and non-Māori MND patients in Aotearoa New Zealand and identify key areas for practice change for future research. Methods: literature review; mapping the patient journey and challenges, interviewing patients and carers, including Māori; seeking information from healthcare providers (management and staff) about delivery gaps; seeking information from like countries about care delivery. A research proposal will be developed for a subsequent grant application.